有姑息治疗需求的儿童、青少年和青年患者报告结局测量指标：范围综述。
Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.
机构信息
Department of Nursing and Health Promotion, Oslo Metropolitan University, St. Olavs Place, Post Box 4, 0130, Oslo, Norway.
Lovisenberg Diaconal University College, Lovisenberggt, 15B, 0456, Oslo, Norway.
出版信息
BMC Palliat Care. 2023 Oct 6;22(1):148. doi: 10.1186/s12904-023-01271-9.
BACKGROUND
Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC).
METHODS
Arksey and O'Malley's 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published.
RESULTS
Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions.
CONCLUSION
The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC.
TRIAL REGISTRATION
Review registration: ( https://osf.io/yfch2/ ) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).
背景
衡量结果有助于评估患有危及生命/致命（LL/LT）疾病的儿童、青少年和年轻人（CAYA）的姑息治疗服务。建议实施患者报告、代理报告或以患者为中心的结局测量（以下简称 PROMs），以确保姑息治疗服务的实施。本范围综述的目的是提供一份有关有资格接受儿科姑息治疗（PPC）的患有 LL/LT 疾病的 CAYA 的 PROMs 的概述。
方法
采用 Arksey 和 O'Malley 的 6 阶段范围综述框架来指导综述。确定的引文必须报告任何背景下的 PROMs，包括年龄在 25 岁以下患有 LL/LT 疾病的 CAYA。2021 年 1 月在 Medline、EMBASE、CINAHL、APA PsycInfo、Health and Psychosocial Instruments 和 AMED 中进行了系统检索，并于 2022 年 6 月进行了更新。引文由 pairs of researchers 独立筛选。范围综述方案已注册，并进行了同行评审和发表。
结果
在 3690 篇确定的引文中有 98 篇报告被纳入，其中大多数来自西方国家，涉及患有癌症或器官衰竭的 CAYA 中的 PROMs。共确定了 80 种 PROMs，评估了一系列现象，其中在持续治疗阶段的生活质量和症状（尤其是疼痛）最为常见。在诊断时或临终关怀时只有少数关于结局测量的报告。在确定的报告中，CAYAs 自己报告了 PROMs，或者在大约一半的报告中与他们的父母合作，而其余的则由代理人代表 CAYAs 回答。在确定的报告中，PROMs 用于通过横断面或纵向研究来描述样本，而较少用于评估干预措施的效果。
结论
在有资格接受 PPC 的 CAYA 人群中，确定的 PROMs 以高收入国家在持续治疗期间的研究为特征，主要针对癌症或器官衰竭患者。需要更多的研究来了解患有其他 LL/LT 疾病的患者，以及在疾病过程的不同阶段，特别是在诊断时、向成年期过渡时和临终关怀时的情况。本范围综述有关有资格接受 PPC 的年轻患者的 PROMs 可能为未来有关 PPC 中患者/代理报告或以患者为中心的结局测量的研究提供信息。
试验注册
综述注册：（https://osf.io/yfch2/）和已发表的方案（Holmen 等人，Syst Rev. 10:237, 2021）。
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